When our boys were born with visual impairments one year apart in Nashville, TN, we found each other and became united as two moms on a mission.
When our boys were born with visual impairments one year apart in Nashville, TN, we immediately sought out services to help support our sons in their early development. We were both led to early intervention services in our state, but soon learned that professionals specifically trained to help infants with visual impairments were not easily accessible. Brought together by a Certified Teacher of the Visually Impaired (CTVI) who worked with both of our sons, we quickly became united in the mission to advocate for and support other families like ours, and to make high-quality, individualized, ongoing services readily available for those who followed in our footsteps. In 2020, we founded BEST with one goal in mind — to ensure all families in Tennessee with blind or visually impaired young children have a place to go for support and are equipped with the specialized service, resources and information they need to support their children in achieving their BEST start in life.
Stacy’s Story
My youngest son, Nathaniel, was assumed to have been born a healthy baby in July 2016 after an uncomplicated pregnancy. It wasn’t until around three months of age that I began to worry about his odd and seemingly unrelated symptoms – he had a bulging fontanelle, nystagmus and strabismus in his eyes, noisy breathing, a hemangioma, and lower than expected weight gain (in the end, the hemangioma actually was unrelated!). After several months of desperately searching for answers, we learned one fateful day that his bone marrow (our blood making factory) was literally failing and he could eventually go completely blind and deaf and pass away by the age of two. This was all due to an incredibly rare bone condition called Malignant Infantile Osteopetrosis. Thankfully science had discovered a cure, albeit a nasty one – a bone marrow transplant after myeloablative chemotherapy. Nathaniel received his transplant in January of 2017 when he was only 6 months old. With praise, I say that the transplant was successful and he did not succumb to any of the potentially fatal side-effects. But what science cannot yet cure is the irreversible damage to both optic nerves which leaves him legally blind/visually impaired.
This unexpected chapter of our lives was beyond difficult and a situation that no one ever expects to be in. I suffered physical health issues of my own due to the toll it takes on a caregiver. But one of the many lessons I learned during this time is that it truly takes a village to raise any child and especially a child with special needs. I leaned hard on Nathaniel’s care teams – first on his incredible health care providers and eventually on his therapy team that is helping him catch up developmentally. We were fortunate to have a Certified Teacher of the Visually Impaired since his visual impairment affects literally every part of his learning and daily life – but not every family in Tennessee is given this access.
His current diagnosis is developmental delay with autism spectrum disorder and visual impairment. There isn’t a person who exists who had all of the knowledge needed to both save Nathaniel’s life and then to help him thrive with that life he has been given. And it is a life that is so worth it. It is my mission, with Alison and BEST, to ensure that every family of a blind or visually-impaired child in Tennessee has access to the critical support of a CTVI. Raising a visually-impaired child is daunting, to say the very least, and I know first hand that families need a village to lean on.
Alison’s Story
My son, Finn, was born in 2017 after a full-term, no complication pregnancy. Before leaving the hospital, we were told that something looked atypical with his eyes. After a string of doctor’s appointments in his first few weeks of life, we learned that both of his retinas were completely detached. Finn went through MRIs, blood tests, appointments with specialists in multiple states, several rounds of genetic testing and even two surgeries under anesthesia all before he was 9 weeks old. Those early months of adjusting to becoming a mom for the first time, coupled with the shock and worry of learning of Finn’s eye condition, were some of the most difficult of my life. One of the hardest parts was having no blueprint – I had no idea how to best help my child, knew no one who had walked this path before us, and was suddenly unsure of what the future might hold. Through research, self-advocacy and networking, our family has successfully navigated the unknown, and we continue to do so.
Finn is now three years old — he is happy, healthy and thriving – he also happens to be completely blind. Finn is thriving in a sighted world thanks to the team of professionals, educators, other parents and support groups that have been behind us every step of the way. I have no doubt that the support services we sought over the last three years have been crucial in Finn’s cognitive, social, and emotional development. But putting our team together was not an easy process and at a time when I was mentally and physically fragile, I longed for easy. I wished for someone to lead me and a place to go for all the answers. After seeing the positive impact of early intervention firsthand with my own son, I made it my mission to help other families more easily navigate the process of securing these pivotal services for their child. This mission has led me to pursue my own TVI (Teacher of the Visually Impaired) degree and to partner with Stacy in the founding of BEST. My sincere hope is for BEST to become the place to go for answers, support and guidance for families like mine and Stacy’s — to create that blueprint that I once longed for myself.